Silk Road City — photo essay

Six months ago we stumbled off our 8th and final airplane that had brought us from America to our new home in northern Afghanistan…almost.  Actually, we still had an hour and half drive before we reached our final destination.  Six months ago, it was blazing hot and dusty and with the haze of jet lag and inevitable stomach bugs, those first weeks seem almost like a hallucination of some sort.  We spent the first six weeks house hunting and getting settled.  We started to get to know the people on our team and slowly got our brains back in Farsi speaking mode.

Today the weather is, literally, freezing. I’m typing this, bundled up in many layers and sitting as close as I can to our coal stove.  All three kids are in school, which is in a room across the yard from our house.

Our kids’ teacher and our other teammate Miss B and I are busy planning a shopping trip to the big city later this month.  Mr. Incredible is at his workshop in town, getting ready to manufacture heating stoves.

Later in the day, I’ll head off to language class and Dash and Violet will ride their bikes through our neighborhood to their language class and then on to meet up with some Afghan friends who come over to our teammates house to jump on the trampoline and do homework together.

All that to say, six months in, Silk Road City is becoming home.  I thought you might like to see some photos of places and people around town.  You’ll notice there are no pictures of ladies — this is a very conservative place and most women go out fully covered, including their faces and friends who do let me take their picture, wouldn’t want their faces shown to people they aren’t related to.   There is so much I could show you, but I tried to limit myself, with this post, to pictures of things in our every day lives.

 

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Dash getting a stylish haircut at the barber shop

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My language teacher’s niece. Her name is literally “Moonlight.” I have made it my mission to get this gorgeous girl to smile at me and we’ve wasted many a “study” hour cooing at the baby. But seriously, how could you not?

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These motorcycle rickshaws are how we get around as a family. Mostly though, Dash and Violet ride their bikes, Mr. Incredible takes his motorcycle and I do a lot of walking.

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Jack Jack’s favorite thing to do, is to catch a rickshaw with Daddy and help him with his work in town.

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Silk Road City is mostly desert, so this park/orchard at the edge of town is the perfect spot to go when we need to hear wind in the trees and walk on green grass. It’s almost always empty, so the kids and us ladies can walk and run freely.

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Down town has a few shiny buildings and modern offices, but it’s still mostly an outpost of open bazaars and mud walled houses.

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This guy lives in the big city an hour away from us. He runs a metal casting workshop with his sons and has been very hospitable to Mr. Incredible, showing him the way things are done, helping him find supplies and patiently answering this foreigner’s many many questions.

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I walk this street nearly every day to language class. It’s quiet and rural and most days I have to doge herds of goats and small shepherd boys. The floating pink balls in the picture are sticks of cotton candy. The neighbor kids come running as these guys walk down the road singing and calling out their product.

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This sweet girl was proudly showing me her bike riding skills as I walked past one day. She agreed to stop for a picture and gave me this full faced grin.

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Violet, Dash and Jack Jack tearing up down a dusty road near our home at sunset.

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On our drive home from the park (pictured above) we passed this camel. He’s all dressed up for a wedding and will be escorting the new bride and her possessions to her new home.

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This camel, however, got turned into stew meat. Violet and I had some camel stew at the big feast at the end of Ramadan. It was served with pumpkin, fresh naan and tea and it was yummy.

 

Forward into Forty

Turning 40 has put me in a retrospective mood. At first, I thought I’d hate it, I grinched and whined to my husband and I felt…old. But then, a few weeks ago as my birthday approached, Mr. Incredible and I sat down and talked over the past year and suddenly, turning forty didn’t seem hard, it seemed fitting that I was starting a new decade with so many new things, good things, renewed things in my life.

My 39th year was a watershed year in many ways. The year before was full of death, loss and confidence shaken – confidence in my marriage, my parenting, our work in Afghanistan and if anything we’d try to do was worth all this awfulness.

We took a year off, went home to Colorado and spent time with people who loved us and counseled us well. We got a diagnosis for Mr. Incredible and shadows that had been chasing us our whole marriage got a name, got some medicine and a plan for coping and slowly those shadows are fading away.

I feel more ready to do hard things than I did a year ago. I’m doing intensive language learning for the first time in eleven years (having babies, toddlers and then babies again is not the preferred method for learning a foreign language, in case you were wondering) and I’m finding that digging deep and making this old brain do serious academic work is in fact something I can do.

After so much emotional turmoil, I found myself on shaky ground, with my faith and with myself. Not lots of existential questionings with capital letters and bold font (Does God Exist), but more of a fog of grief and worry and an unmooring of my place in His work and Kingdom. I’m very much an ISFJ on the Myers-Briggs. I see the world through my experiences and senses. I like order and tradition and for my people to be happy.

I get Mrs. Weasley or Samwise Gamgee on the “Which Harry Potter/Lord of the Rings character are you?” quiz and then I have to take it five more times till I get Hermonie or Arwen – the heroines of their stories, not the helpers. My experiences and senses had so thoroughly sucked and I was struggling with much dissatisfaction with my personality and the way I respond to the world.

This past summer I read two books that cut through some of that fog and have helped me immensely in finding my place again and even better than that – being comfortable with who I am at my core. “Jesus Feminist” by Sarah Bessey and the very funny “For the Love” by Jen Hatmaker gave me clarity and even permission to be cool with my personality, my political views, my world view and our family’s global lifestyle and my main role as wife and homemaker. No, it’s not for everyone, but it’s for us, and we love it. It’s okay to be Mrs. Weasley or Sam. Their part in the stories are crucial, and Frodo and Harry wouldn’t have made it far without them and for sure they would have been a lot more hungry and cold.

So, it’s a new decade and a new year. We are in a new town in Afghanistan, which I’ll call Silk Road City and we are ready to do a new thing. I may have turned forty first because of that December birthday, but now I get to watch as my college roommates, high school friends, the people I spent my twenties with in Egypt and my thirties with in toddler playgroups walk into their fortieth year and I will walk with them, with hope.

 

 

 

Because He Lives

Last year we celebrated Easter in Windy City Afghanistan.  We didn’t know then that a few days after that lovely morning, we would be mourning loss after loss of friends murdered, cancer, hearts too broken to be fixed, and accidents while on vacation.

It’s no secret I’m going into the month of April with a heavy heart, knowing that one year anniversaries are coming up and will keep coming for the rest of the year.  John. Lisa. Sejia. Bekha. Werner. Karina.

But, Easter.  Resurrection Sunday.  The reason, the only reason, that we are not smothered by grief, is knowing that every one of our friends have loved Jesus well and the mothers of the children in that list say every time “Better is one day in your courts than thousands elsewhere” and my girl is dancing with Jesus.

So we celebrate.  We celebrate Jesus’ triumph over death.  We celebrate the joy of spring, of new beginnings.  We celebrate being together, with a sharper knowledge that each day together is a blessing not to be taken for granted.

Have you ever been this happy to find an egg?

Have you ever been this happy to find an egg?

Violet, being the best big sis

Violet, being the best big sis

Dash and RK. Double trouble these two.

Dash and RK. Double trouble these two.

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taking stock of loot

Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!

— Bill Gaither

What We Have

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Our life is not typical, not by a long shot. We don’t always live in America.  We don’t always live in Afghanistan though either.  We are followers of Jesus from the west, living among devout Muslims in Central Asia.  Both the Rocky Mountains and the Hindu Kush are visible from our living room windows.

Kabul by sunset

The Hindu Kush, a range of the Himalayan mountains runs diagonal through Afghanistan and rings Kabul

 

We have three kids and one of them has an extra chromosome.

It can get confusing at times living in two places at once.  Sometimes I rummage in my kitchen for ten minutes before I remember that I do indeed have a pastry blender, but it’s in Asia.

But some things are constant, no matter what continent we live on.  In honor of World Down Syndrome Day (3/21 for the third chromosome on the 21st) here are some things we have because we have Jack Jack.

1) We have a team. Speech therapist, special ed teachers and aides, and a kindergarten teacher named Miss Bliss (could there be a more perfect name for a kindergarten teacher??) who spend their days thinking of ways to help Jack Jack learn and communicate the very best he can.

Kindergarten

Kindergarten

And we can take them with us!  Our speech therapist has offered to do sessions over Skype, our special ed teacher posts schooling ideas to a Pinterest board and my Facebook friends lend support for potty training and the very best iPad apps for reading.  Every where we go we have a team of people cheering Jack Jack on.

2)  We have family.  In the States we are surrounded by grandparents, aunts, uncles and cousins and a church family that will blow your socks off.  They know we are weird and don’t laugh if I announce that the tap water here is safe to drink.  They give Jack Jack every opportunity to be a part of their lives and to join them in what they are doing. Our friend Wayne knows that if Jack Jack is coming over, he’d better be ready to feed the horse and check the chicken house for eggs because Jack Jack comes ready to work.

Helping Papa wash the motorcycle

Helping Papa wash the motorcycle

In Afghanistan we have foreigner friends who become aunties and uncles to my kids.  Friends who enthusiastically come for a showing of Frozen, or an Elmo themed birthday party because we if we are going to be crazy enough to live in Afghanistan, then we’d better stick together and have fun!   We have Afghan friends who say “how can I help?” and old grandmothers who stuff him with sweets and tea and pinch his cheeks like every other kid on the street.

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Jack Jack’s fifth birthday with Aunties from England, Australia, Finland and Afghanistan to help him celebrate

 

3) We have our little routines and rituals.  Stuffed animals that have more miles on them then most cars, criss-cross oceans and make whatever bed we are sleeping in safe and familiar.  We bake sugar cookies for Christmas in a Muslim country and have a picnic for Naw Roz (Persian New Year) in America.  For Jack Jack our routines are especially important to help him understand and navigate his world.  We get up and get started with our day at a certain time, home school or public, eat dinner together as a family every night and a Bible and bedtime story with Grandma on Skype or with mom on the cushions on the floor.  All the kids are flexible and easy-going so we don’t have melt downs if something is skipped or out-of-order, but we can see how having a few things pinned down in the day makes it smoother for everyone.

Naw Roz picnic in our yard in Windy City Afghanistan

Naw Roz picnic in our yard in Windy City Afghanistan

Our lives probably look different then yours, but if you are here as a new mom with a new diagnosis, I hope you can see that it’s because choices we’ve made to live cross-culturally, and very few because of Down syndrome.

Happy World Down syndrome Day!  Happy Naw Roz too.  We’ve a lot to celebrate with spring equinox and a little boy and his whole tribe that we get to be a part of, thanks to that third chromosome.

Oh, just haging out. In Sri Lanka.

Oh, just hanging out. In Sri Lanka.

Ten Years Ago

Our firstborn, Violet, turned 10 this weekend.  She marked the occasion by hosting her first friend slumber party.  The house was full of super giggly fourth grade girls who were alternately grown up while doing their nails and still little girls when snuggling down with the half a dozen stuffed animals they each brought to sleep with.

Having our baby girl turn 10 has been so strange. It does not feel like a decade has gone by.  Do you guys realize that the wee children who graduated from high school in 2004 had their 10 year reunion this summer?  I don’t even know how that math works out.

Here are ten thoughts about life in the early 2000s and Violet’s first year.

1)  Ten years ago Mr Incredible and I were living in a very tiny apartment in Mesa, Arizona.   We had this hilarious, floral print couch and still basically lived like we were in college, eating a lot of Raman and cold cereal.  We made the controversial decision to get rid of our land line and to strap our cell phones to our belts permanently.  We got internet in the apartment for the first time and had a DVD player and a VCR all stacked up on our plywood entertainment center.

dad and baby sleeping on couch

Isn’t that the purtiest couch you ever saw?

 

2)  “Friends” was in its final season and I was hanging on to “ER” because, I’d started watching in college when George Clooney was young, and I was going to see it through to the painful end.

3)  Violet was born six weeks early, and I went from working full-time in an office, training and sending young people to the Kurdish parts of northern Iraq to help with the relief efforts there, to being home, alone with a small infant, that could have no visitors until sometime after Christmas.  I was so lonely and bored I watched ever single minute of the extended versions of The Lord of The Rings, with and without the director’s commentary and all the extras.  That took about a week and then I moved on to every BBC Jane Austin drama ever made.

6 weeks premature meant a couple of weeks in the NICU

6 weeks premature meant a couple of weeks in the NICU

4)  I had no mommy friends.  I lived on my Babycenter.com birthboard.  No decision, from what the baby should wear when we took family photos to what I should wear when we took family photos, could be made without thoroughly discussing it with e-maginary internet friends.  Looking back, I cannot believe I never thought to find a mommy group with actual people in it.

5)  My sweet friend Lisa was just getting into midwifery and had planned to come for the birth at Christmas.  Of course, she missed the actual birth but we had the best time together when she did come, after quarantine was lifted.  Lisa was with us in Afghanistan, before Violet was born, was a part of my life every year after that until this year when she switched this earthly home for her true one in Heaven.

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6) We bought our first digital camera for her birth.  We then proceeded to take elevinty million pictures of her doing… well, pretty much nothing.  I included in her (first) baby book,  four pictures of her looking at our cats from her play mat because I couldn’t choose between her focused or unfocused look.

7)  By the time she turned one, Violet had been to England and we were living in Kabul, Afghanistan.  Before she turned two she’d also been to Pakistan, Tajikistan and Thailand.

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camping in Tajikistan

 

8)  Ten years ago, Kabul was in ruins.  The airport runway was littered with burned out wreckage of planes from the war with the Soviets and the streets were lined with piles of rubble and bullet-ridden walls.  Now, the airport is gleaming (thank you Germany) and clean and even has a luggage carousel. Streets are paved and you have to search to find a pile of rubble amongst the new multi-storied shopping centers and apartment complexes.  We are privileged to have witness it’s revival.

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One neighbor’s house in Kabul with bullet holes and bomb damage

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Another neighbor’s house — brand new with marble and roses

 

9)  We were really, really young.

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10) In 2004 Pixar released a new movie.  Can you guess?

 

 

The Saga of Kindergarten (special needs adition)

It’s November.  I realize I’ve missed the boat on the back-to-school post, but for the first few weeks of school I wasn’t sure if it would be a school-is-great/inclusion post or a diary from the nervous hospital where nice people with pharmaceuticals come and check on me — sort of post.

We decided a bit late in the summer that we were not going back to Windy City, Afghanistan for several more months.  We wanted the kids to have the assurance of one place to start and finish the school year so we enrolled Violet and Dash in their classes in our small, hometown Christian school.

This school is not just any school.  My parents helped to start it.  I went to school there and so did my sisters.  My mom has been a teacher there for 30 years.  It is a big part of my childhood, my faith and our family.  Violet and Dash have gone there when we are in the States and their classmates keep in close contact with us when we are apart.  When we were in Afghanistan this past year, Dash’s classmates went out on the playground and yelled and yelled, in hopes that he could hear them.

When Jack Jack was diagnosed with Down syndrome, the school was something I really grieved over, thinking that it was closed to him; that it would not be part of his childhood.  Too academic, too fast paced.  No way he could go there.

And then, suddenly, we were faced with needing to decide where to have Jack go to school and I was not thrilled with our public school options, but so emotionally drained and exhausted from all the losses of the past year that home schooling wasn’t much of an option either.  My mom encouraged us to look at putting Jack Jack in the Christian school, so with some trepidation, we set up a meeting.  And the meeting was brief but positive.  Yes, we’d loveJack Jack to come.  We think it would be great for him and great for the school.  But there are no services.  No aid, no help adjusting the curriculum.  Okay, I’ve been homeschooling, I think I can figure this out and we really do want him part of this community.

First day of fourth grade, second grade and kindergarten

First day of fourth grade, second grade and kindergarten

I rounded up several volunteers, a different person each day, to help him in the classroom.  Parent involvement is a huge value, so there were several moms wanting to help out in the classroom and willing to work with Jack Jack and me.

A friend of our family, who had adopted two kids with special needs later in life and who had recently lost their youngest son, was longing to be back in the world of special needs parenting and so she took on a more official “aid” role for Jack Jack in the classroom.

Serious work going on

Serious work going on.  Ds moms will cheer for the pencil grasp!

And then, ten days into the school year, just as we are figuring out things like a potty schedule, how to help him with transitions (he was flat out refusing to come in when the bell rang) and what his learning curve was, the kindergarten teacher resigned.  And good friends of ours lost their little girl in a complicated heart surgery.  I was devastated on both accounts and my knee jerk reaction was to yank Jack Jack out of the classroom and keep him close, keep all these bad things away from him.

Don't let the smile fool you.  It took some stern teacher voices to get him to line up.

Don’t let the smile fool you. It took some stern teacher voices to get him to line up.

But…all the reasons to have Jack Jack in this Christian school remained.  The community we’d built, going to school where Violet and Dash and Grandma are right with him, the prayer and values of our faith, and the fact that his resource teacher was seeing more progress in 30 minutes a day then I’d managed in a year of home schooling… We stayed, but it was a day by day decision for a while.

The classroom was a bit chaotic, but the parents all rallied behind the school, we took turns subbing and volunteering and keeping things as normal as possible for the kids and in three weeks a new teacher was hired.  And in those three weeks, something happened.  Jack Jack went from being the only kid in the school with special needs, to being a kid in school.

learning some songs with his cousin, who offered to stand with him so he wouldn't get lost in the crowd.

learning some songs with his cousin, who offered to stand with him so he wouldn’t get lost in the crowd.

He has friends, kids who consider Jack Jack one of their friends.  He does circle time and calendar, chapel and the Pledge of Allegiance.  He plays with Dash and those adorable second graders at lunch and gives Grandma a hug and her junior-high class a high-five when he goes by her classroom.

And you know what we don’t have? IEPs.  Long, drawn out meetings where battle lines are drawn over services.  No pointless testing — I work with his resource teacher and a private reading specialist and prepare his work for the week.  I went to parent teacher conferences with a list of all the things he’s learned in last quarter and some ideas of where to go in the next.  The principle was pleased, his teacher was pleased.  We discussed the upcoming pancake breakfast fundraiser, prayed for each other and meeting over.  We would not trade that for all the special ed degrees in the world.

So far I’m zero out of a hundred on all the things I thought were out of reach because of Down syndrome.

Inclusion works

Inclusion works

Finding Joy

It’s been a long time since that cheerful, fun Easter post.  I think most people who read this blog know that we had a horrific spring in weeks that followed Easter.  We lost a friend and a co-worker  in an attack on a hospital in Kabul.  I lost a beautiful young friend to cancer two weeks after the attack.  Our visa and long term plans for staying in Afghanistan were suddenly in question and Mr. Incredible and I had to rapidly change gears to a different work focus.  The Afghan presidential elections was moved to the weekend we wanted to leave for our summer break so we had to leave the country much sooner then we had planned to beat the shut down of airports and roads, which meant we had to speed up the school year, packing and saying goodbyes for the summer.  The grief, stress and exhaustion were overwhelming.

You can Google the attack on CURE hospital if you want details and you should definitely watch this clip of Dr. Jerry’s wife, Jan and her grace-filled response to the news.  God knows, should I ever be in her place, that is the response I’d want to have.

After leaving Afghanistan in June we took a couple weeks in Turkey for debriefing and deep healing prayer.  We’ve been back in Colorado for a month now and I feel like I can look around and not be overwhelmed with culture shock, sadness or feel my heart rate raise if I think about going back.  On the advice of some very wise friends and counselors, we are taking a much longer break then we had originally planned.  There is now time and space to process, to breathe deeply and to just relax and enjoy life.

I’d like to focus on being grateful, finding joy and adventure in life again.

Like hiking in the San Juan mountains and watching Mr. Incredible and Dash edge their way to waterfall.

 

IMG_0398And watching Violet and her Grandma spend time together in the kitchen (and check out how happy Jack Jack is with the results)

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Enjoying fireworks in the tiny mountain town Mr. Incredible’s family is from.  Jack Jack promptly fell asleep right after they started.  Obviously pie is more exciting.

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And finding laughter and comfort in good friends (a longer post on this sweet girl coming up)

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I think some of the healing process for me is wanting to come back to this blog, to tell stories again and share more of what’s in my heart.  Thanks for hanging around with me.

 

Easter in Windy City

We had a lovely Easter Sunday celebration at our home in Windy City.  It was low key and quiet, which was just right, after the tensions and high security stress of the Afghan elections.  It felt good to come together with other expats to celebrate Jesus and being together in such an amazing time and place.  Here are a few photos of our time together.

Daddy was in charge of egg coloring this year.  Momma went out to dinner with friends.  I feel a new tradition coming on

Daddy was in charge of egg coloring this year. Momma went out to dinner with friends. I feel a new tradition coming on.

Jack Jack's reaction every time an egg came out colored

Jack Jack’s reaction every time an egg came out colored

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My Mr. Incredible. In that particular shade of ice blue, I like to call him “cupcake”.

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Spring flowers from our teammate’s garden and hand blown glass vases from the bazaar in town.

A moving worship service and candles to represent small lights shining out in darkness.

A moving worship service and candles to represent small lights shining out in darkness.

Miss H shares her lap and her song book with Jack Jack and Jo-Jo

Miss H shares her lap and her song book with Jack Jack and Jo-Jo

We ate really well.  Special Easter foods from Finland, Germany, the States and Korea.

We ate really well with foods from Finland, Germany, the States and Korea.

Miss L and Violet are good friends and we are so blessed to have women who fill honored "auntie" rolls in our kids' lives.

Miss L and Violet are good friends and we are so blessed to have women who fill honored “auntie” rolls in our kids’ lives.

He is risen.  He is risen indeed.  Happy Easter from Windy City Afghanistan

He is risen. He is risen indeed. Happy Easter from Windy City Afghanistan

 

 

A Day in the Life (World Down syndrome Day blog hop)

A Day in the Life

Our life is not typical.  Not even close.  Even before Jack Jack came into our lives with his extra chromosome, people would say, if they were being polite, “interesting” and if they were being honest would say, “Extreme and weird.”

And that is just fine with us.  Living in Afghanistan, with a young family, is our normal.  And this year, my two worlds, Afghanistan and Down syndrome come together in beautiful way.  March 21 is Naw Roz, or Persian New Year.  It is a glorious time of year right now, spring is in slow, full bloom and it feels right to celebrate the New Year now when things really are new and growing.  3/21 is also World Down Syndrome Day, chosen because the numbers of the date represent the third chromosome on the 21st – trisomy 21/Down syndrome.

Our location is different from most of you reading this.  You might find it hard to imagine how our days look when what you see is tanks, shrouded women and poppy fields.  I’d like to give you a different glimpse and show you what a day in our life is like.

Loving on his bunny, Chestnut

Loving on his bunny, Chestnut

Mr. Incredible and I are up at 6:30.  If we’ve had electricity in the night, there is hot water in the tank for a shower.  In the summer, doesn’t matter if there is electricity because the water tank on the roof heats up all on its own.  Mr. Incredible is in charge of breakfast.  This is because he wakes up verrrryyy sllowwly and it was decided years ago, that for the sake of our marriage he should spend some time alone in the kitchen mumbling at pots of boiling water, rather than trying to deal with kids who cannot find their socks.

I get the kids up at 7:00 and take Jack Jack to the potty.  He has been staying dry at night for a while now, so this is a great move forward in potty training.  A great thing about our schedule is we don’t have to hurry up to catch a bus or start school exactly on time, so I’ve been taking a longer time with him in the mornings so he can get himself dressed.  He struggles a lot with hand coordination, so getting a shirt on over his own head can be frustrating and he’d rather just let me do it.   Some days we preserver and he does most of it by himself.  The kids make their beds and pick up their rooms and we all eat breakfast together.

We start home school around 8:30ish… sometimes more like 9:00ish… If we start at 8:30 we do a version of “circle time” that Violet and Dash think they are too old for, but love it anyway.  We sing songs, do the calendar, Bible memory verse and then they can color or draw until Dad comes to do math.  While the big kids do math, Jack Jack and I have time together.  This is his focused school time, but it can range all over the place.  Sometimes I do shopping lists and he plays on the iPad.  Sometimes he follows our house helper, his beloved “Khala jan” around helping her vacuum and dust.  I try to make sure he does his sight word flash cards, some pre-writing work with the white board or crayons and paper and we do a few speech therapy drills.  His speech and reading skills are a whole other post for another day, but I will say that I’m pleased with what we’ve been doing, but I think we’ve got some pretty big holes that need addressed.

Looking through his favorite book -- The Beginners' Bible

Looking through his favorite book — The Beginners’ Bible

After an hour of math we all take a break outside.  They all have chores to do too and Jack Jack’s is to help feed the rabbits and make sure all the shoes are lined up neatly in the entry hall.  Throughout the day he is called on to help set or clear the table, hang up laundry and pick up any toy messes that he makes.

Jack Jack hangs out in the classroom for the rest of the morning.  Often he sits on my lap at my desk and we do handwriting or education apps Facebook and Pinterest on the iPad while Violet and Dash work on language arts assignments.  When one of them is done, they will play games, do flash cards or read stories with him.  At 11:00 he is allowed an Elmo or Curious George DVD.  He is only allowed them at this time of day, but that doesn’t stop him for asking for “Emmo George, Emmo George” all.day.long.  We have lunch together – often Mr. Incredible is home in the afternoons and then leaves for his teaching job in the evening.  We do Dari lessons, quiet reading and bits and pieces of school that didn’t get done in the morning and finish up the school day with a snack and a Read A Loud book at 3:00.

The favorite time of day is 4:00 when our team mate kids are finished with their day and all seven kids can play together, running between our houses, which are connected by a wall and a gate between the yards.  Jack Jack is a full member of this little tribe.  He is included in the games with the bigger kids, but also sits and plays baby dolls with Joy, the youngest of the group.  Often Afghan neighbor kids are around too and have gotten good at understanding his sign language and will push him on the swing or chase him around.  If the big kids have run off and are too fast for him, he is very happy to find his “Koko”, which means uncle.  Koko works in our yard as a guard, gardener, handy man and gate keeper.  Jack Jack is happiest when he’s helping to sweep the dust or shovel the snow, polish the motorcycles or water the grass.

So glad to have this playground in our front yard

So glad to have this playground in our front yard

Violet and Dash have different days where they are assigned to help in the kitchen, and Jack Jack is usually included, unless I’m seeing the big kids needing some one on one time with me.  We do some baking in the afternoon and start dinner around 4:30 or 5:00.  Jack Jack loves to stir, measure and pour and of course, lick the spoon when we are done.

how to use a mixer when there is no electricity: plug into an inverter that runs off of car batteries

how to use a mixer when there is no electricity: plug into an inverter that runs off of car batteries

Again, showers for the kids depend on how much hot water we’ve ended up with by the end of the day.  I clear up from dinner and the kids get ready for bed.  Jack Jack gets a story or two that he picks out and a Bible story from his “Jesus Story Book”.  Then he snuggles with me and we listen as Daddy reads out loud from the Chronicles of Narnia.  Jack Jack falls asleep before the story is finished and we carry him to bed at 8:00, ready to do it all again tomorrow.

So, what do you think?  Is it like you pictured?  There are days I truly mourn the lack of speech therapists, special education teachers and great resources that I see other kids with Down syndrome in America getting.  I worry if I’m doing enough or good enough.  Every day I miss my family and our friends who helped and held us up those years when we didn’t know how we would ever have both Jack Jack and Afghanistan.  But, in the balance we have this amazing, untypical, extraordinary life that is on a day to day basis the most normal kind of day anyone could have.

1-IMG_7939Happy World Down Syndrome Day!  Salay –naw tabrik boshan (happy new year)!

Click here to read more great blogs on a “Day in the Life” of someone with Down syndrome

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